This study aimed to examine the factors affecting forgone care among patients with type 2 diabetes. According to our results, nearly half of the patients reported forgone care, which was higher than in other studies. Röttger et al. conducted a study on patients with chronically ill in Germany. In their study, 14.1% of persons reported forgone care [29]. In the study of Towne SD Jr. BJ et al., among those with diabetes, the rate of forgoing care due to cost was 17.9% in 2011 and 14.7% in 2015, showing a slight decline [30]. Given the implementation of Iran’s Package of Essential Noncommunicable (IraPEN) disease, it can be concluded that the percentage of forgone care in patients with type2 diabetes is high, which is indicative of the poor performance of the healthcare system.
In this study, type 2 diabetes patients reported the financial burden resulting from treatment costs as the leading cause of forgoing treatment. Since most patients were elderly individuals with low socioeconomic status, and only a small percentage of patients were covered by supplementary insurance, the disease’s treatment cost was reported as the leading cause of forgone care. Bremer et al. in Germany showed that individuals with low income as well as people suffering from chronic illnesses face a higher financial burden and forgo health care services more frequently at the same time [31]. Kim et al. conducted a survey in 28 countries in 2017. They showed that income is significantly associated with forgone care in 21 of 28 examined countries, and people with lower income are more likely to forgo needed medical care [17]. A study indicated that difficulty paying medical bills increased the effect of lack of health insurance in predicting forgone medical care and had a conditional effect on the association between education and forgone prescription drug care [32]. Litwin et al. showed that forgone health care due to cost occurs among a substantial minority of older adults. Moreover, relinquished care is associated with younger old age, greater health needs and perceived economic inadequacy [33].
Frustration and dissatisfaction with the treatment outcomes reported as the second cause of forgone treatment. Given that diabetes and other chronic diseases require long-term care and the consequences of their treatment are not immediate and short-term, in many cases, the patient cannot make a reasonable association between receiving treatment and its outcomes. Hence, low quality of care and poor assessment of treatment efficacy are important factors in forgone treatment.
The third and most important factor affecting forgone treatment was related to the urge to prescribe medication and treatment. Of course, it seems that this factor was of high importance in patients with shorter disease duration and lower illness severity. Patients’ attitude towards disease plays an important role in patient adherence to prescribed medication. Whereby it is the duty of a physician and other providers to inform patients seriously about the consequences of irregular follow-up of treatment. The Fourth and fifth common cause of forgone treatment was related to a long distance from the health care centers and long waiting time to receive service. Long-distance from the health care centers was more likely to be common in patients residing in rural area. Long waiting time as one of the dimensions of the quality of care was alone one of the most common causes of forgone treatment. 73.6% of the patients reported these five factors as the most important reason to forgo treatment. Therefore, focusing on managing these five factors can greatly reduce the rate of forgone treatment and play a crucial role in better management of diabetes. Röttger et al. conducted a study on patients with chronically ill and indicated that forgone care could be influenced by different factors, on the system as well as individual level, which in the individual level, negative experiences (i.e. perceived discrimination) with health care are significantly associated with forgone care [29].
The rate of forgone care was higher in patients without supplemental insurance. For people who were not covered by supplementary insurance, financial barriers to access had a greater impact on their treatment withdrawal. Supplemental insurance can improve financial access to required services by paying basic health insurance franchise and reimbursement of the cost of services that are not covered by basic health insurance. Galbraith et al. showed that Membership in a High-Deductible Health Plan (HDHPs) and lower-income were independently associated with a higher probability of delayed/forgone care due to cost [34]. According to Reynolds et al., treatment discontinuation in patients with type2 diabetes was more in female, younger, Black or of Hispanic ethnicity, have more comorbidities, higher medication co-pays, start both OHAs together, have higher healthcare utilization before the index date and less likely to use prescription mail order in comparison with patients who did not discontinue [35]. In another study, adherence was independently associated with older age, male sex, a higher level of education and income, use of mail-order versus retail pharmacies, higher daily total pill burden, and lower out-of-pocket costs, and also patients who were new to diabetes therapy were less likely to be adherent [36]. Some other studies indicate an association between higher rates of forgone care and female sex, younger age, rural living, lack of health insurance, lack of financial support, low education levels, and poor health [13, 37,38,39,40,41].
In our study, forgone care was more likely to be higher among patients with complications and a history of hospitalization due to DM during the last year and those who rated their disease severity as very severe or very mild. These three variables somehow assess the severity of the disease. Since more complex and expensive services are needed among those with higher disease severity, the cost of care and the quality and effectiveness of treatment is highly important in these patients. Besides this, providing qualified and affordable services to these patients can reduce the withdrawal rate from these patients’ treatment.
Additionally, of the four main factors affecting forgone treatment, the quality of care had the highest impact on forgone treatment, followed by accessibility, awareness and attitudes towards disease and social support. This indicating the provided quality of care did not meet patients’ expectations. Although the mean score of the accessibility factor was lower than the quality of care factor, most patients were of the opinion that the main reason to forgo treatment is related to the financial burden resulting from the costs of disease treatment. Despite insurance coverage, diabetes imposes a considerable cost on patients with type2 diabetes, especially for lower-income patients. Therefore, in order to reduce the rate of withdrawal from treatment, it is necessary to provide financial support, such as strengthening insurance coverage and reducing copayment for low-income people to improve the financial access of these people to healthcare services. These results are in line with other studies in which forgone medical care was higher for those with lower incomes [16, 42, 43]. In Towne SD Jr. BJ et al. study, the rates of forgone medical care were higher among those with lower incomes (<$15,000; 24–31%) versus the highest (at/greater than $50,000; less than 10%), and higher for those with lower levels of education (without high school diploma/equivalent; above 20%) versus all other higher education categories (ranging from 9 to 18%) [30]. In summary, the impact of factors related to the healthcare system (health-care system based barriers) on forgone treatment was far more than factors related to the patient (patient-based barriers).
In this paper, the quality of the care factor’s impact was higher among patients with high income and education levels. In comparison, the impact of accessibility factor was higher in patients with low income and education levels. In other words, forgone care in low- income and high-income groups was more likely to be related to difficult financial access and poor care quality. In summary, the quality of provided care could not meet the expectation of patients with higher socioeconomic status, and the cost of provided care was unaffordable for those with lower socioeconomic status.
Based on this survey, the impact of the accessibility factor was higher in patients residing in rural areas than those residing in urban areas. People living in rural areas face more financial and physical barriers to receiving specialized and advanced services. Therefore, in order to promote equity in access to health care, it is necessary to take appropriate supportive measures to reduce these barriers in rural people. In the study of Towne SD Jr. BJ et al., the residents of rural areas with a diagnosis of diabetes had higher rates of forgone medical care (13–17%) than those in urban areas (11–15%) [30].
Dissatisfaction with the quality of care, accessibility barriers, poor awareness and attitude towards disease and treatment were likely to have a greater impact on the forgone treatment of patients covered by Iranian health insurance than those covered by social security insurance. Although the HSEP and IraPEN have been implemented exclusively in the Ministry of Health and its covered institutions, and Iranian Health Insurance is also covered by the Ministry of Health, the performance of the Social Security Organization has been better in this regard, and Social Security Organization tends to provide more cost coverage and high-quality service for its patients covered.
Younger patients were more likely to report having forgone care due to poor social support and poor awareness and attitude towards the disease than older ones. This difference may be because the disease is less severe in young people, and the complications of the disease have not yet appeared, so both patients and their families pay less attention to the control and management of their disease. Also, people with shorter disease duration are more likely to have poor awareness and attitude towards the disease, which can have a greater impact on forgoing care. Therefore, in order to prevent worsening of the condition of young people and those who have shorter disease duration, it is necessary to provide more social support and the required training on the risk of incidence of disease complications to these patients. In Towne SD Jr. BJ et al. study, forgone medical care was highest among those with lower age, with rates higher than 30% among those aged 18–24 for 2011 to 2013 [30].
The quality of care had a greater impact on forgoing care among patients with diabetes complications and a history of hospitalization because of diabetes complications, and those who rated their disease severity as very severe, as these people need more complex and advanced services and the quality of service is of importance regarding these services. Also, since these patients had lower social support, the probability of forgone care was higher among them. Also, access-related barriers have had a greater impact on forgone care in these patients, as disease status among these patients was more severe and required more complex and costly services. On the other hand, the financial burden caused by the treatment costs is considered as one of the most common causes of forgone care.